Want to really make a parent of a student with Down syndrome cringe? Bring up assessments, especially IQ testing. Sitting around a table, outnumbered by school professionals, describing in detail how your child doesn’t measure up. I’ve been through it (albeit, not IQ scores) and Troy is only in preschool!

Why is this being done and what can be done about it?

It’s understandable that schools must use some sort of assessment to decide eligibility for special education services. The key word here is “services.” Special education is not a place, but a service!

I repeat, federal law does not define disability services as a special education classroom, but instead a “free and appropriate education” in the “least restrictive environment.”

But many school district use IQ testing and other assessments to systematically segregate students.

The school district I taught in called it “tracking.” Supporters of tracking or ability-grouping say it allows students to learn at their own level, and prevents teachers from having to teach many different abilities in one classroom. I argue that the costs to students in the low-level, or special education classroom, negates the benefits to the students in the advanced classes.

Instead, why not follow federal law and court precedent that calls for inclusion with needed supports in the general education classroom? Why not execute a true “Individualized” Education Plan (IEP), instead of systematically creating “places” for groups of students to be served. If a student is best served in a separate room so be it, BUT it should not be an assumed, systematic practice solely based on the student’s test score or disability.

New Approaches to Assessing the Strengths and Weaknesses of Students with Down Syndrome:

“It’s misleading to take that one score and portray the entirety of that child. May be that child functions well when you do non-verbal skills. Parents should make it clear during the testing that the teacher should sit down and understand both your child’s strengths and weaknesses,” says Dr. Jamie Edgin of the University of Arizona.

For the past decade, Professor Edgin has been researching better ways to assess students with Down syndrome. Her team is currently working on two types of cognitive test batteries. The Arizona Cognitive Test Battery is for students 7-years-old and older, and a newer iPad assessments for preschoolers (some of whom are completely non-verbal) called the Arizona Memory Assessment for Preschoolers™. Unlike IQ tests, that are a global assessment with a cut off score, Edgin’s set of tests assesses multiple domains of strengths and weaknesses.

Another method being developed at the UC Davis MIND Institute breaks down scores below the IQ cutoff (the most common IQ tests are not able to measure cognitive ability below a certain level).  “A child placed in a new special education classroom may be given the Stanford-Binet IQ test and obtain a floored score showing no variation in performance, which would give the impression that he is simply low functioning and has no real cognitive strengths or weaknesses,” says David Hessl, UC Davis professor of psychiatry and behavioral sciences and the study’s senior author. “But if our scoring method is used, you are likely to find that particular verbal skills are relatively better, or there are unique visual spatial strengths, and that might help you to better serve his needs.”

The problem is neither of these new methods to test students with Down syndrome are widely available in school districts across the country. “You have to function within the way the school system works. These batteries haven’t been around long enough, and tested enough students to be widely accepted,” Dr. Edgin argues.

So, what do we as parents do when our child’s school wants to use a traditional IQ test?

3 Alternatives to Traditional IQ Testing of Students with Down Syndrome:

1. Refuse: IQ Testing is NOT required for Special Education services, so many parents refuse the test.  Even when a school district argues that a designation of “intellectual disability” cannot be used without an IQ score, parents have gotten around the pesky assessment. Usually by using the “Other Health Impairment” designation instead. Both ID and OHI should be measured by a wide range of assessments and observations, not necessarily IQ scores. Before your child turns 18-years-old, find out what your state requires for eligibility to adult services. Some states require an IQ score to receive these services.
2. Request a Better Test: Professor Edgin says it’s worth asking for a Differential Abilities Scale, which gives a wide range of scores with strengths and weakness. If your school refuses, and you have the financial ability, an outside assessment may be worth your child’s time.
3. Advocate: Ask what test is being given and how the scores will be used. It’s your right to know which assessment your child will be given, and what impact it will have on their education. Never sign an IEP or assessment form without understanding the implications of test results. Another good tip: ask for the test results before the IEP meeting. That way you can leave your emotional response to the test results at home, and better advocate for your child at the meeting. Also, ensure that strengths and areas for improvement are a focus of any conversation.

Know that your child is worth more than one test score. Know your child’s rights, and don’t be afraid to advocate!